Hello! 33 and neurologist thinks have PLS

[Fedupbeingill]

Hello. I have just found this forum so thought would introduce myself.
I am 33 and about 16 months ago started to get pain in my knee after maybe 20mins of walking which gradually got worse until I could walk for maybe 5 mins before the pain started.
My doctor thought it was fall out from breaking my leg 12 months previous so gave me painkillers and sent me for physio. Then both legs started to hurt so he sent me to a back specialist. X-Ray and MRI scan of my lower back showed nothing. By now actually got to see a physiotherapist who took one look at me and said something was not right and thought I may have MS. My doctor sent me to a neurologist who thought it was MS and sent me for a MRI scan of my brain and neck. That showed nothing and by now I have gone off sick from work as can barely walk more than 10 meters on my own. Feet have little feeling and leg muscles seem to be permanently tight. Also just to liven things up every so often at random without warning either leg occasionally just goes from under me.
So my neurologist sends me for EMG which is clear and tells me he thinks I have PLS and came back in April 2013. My doctor referred me for physiotherapy again and when I went it turns out my local health authority has mixed things up and sent me to one for back problems and I will have to be referred again for one which knows about neurological problems.
Anyway that is me. I have been off work for nine months now and my employer has said they have no option but to retire me due to ill health as they can't refill my role till they think of something to do with me. My neurologist is pretty sure it is PLS but won't commit himself so I am struggling to get any help or assistance from anyone. My doctor is trying is best but says he can't prescribe me any medication till the neurologist says so.
I feel pretty cheated from it all as I am only 33 and it feels like my life has been cut short. I am trying to stay on the positive side of things and make the most of it all.
I just wondered if there was anyone else under 40 with this? As everything I read on-line says it mainly affects over 50.
Currently I have little feeling in my feet and ankles. I find it hard to walk as I have no balance at all. I constantly feel like I am going to topple over and often do. I am 6ft tall and weigh 18 stone (and slowly reducing) so there is a lot of me to go over. No wonder the dog runs for her life every time she sees me going. My leg muscles seem constantly to be tight and it makes walking hard. It seems especially worse when I first get up or stay in one place for too long. I get a lot of disapproving tuts when I stagger to the disabled toilets in pubs even though I haven't drunk in a year! It also is the last month or two began to affect my hands. My arms get tired easily and my finger tips seem to have reduced sensation. My hands are very clumsy.
Anyway that is me. I have a blog to write everything down and keep me sane and anyway I would really like to hear experiences of people with PLS especially those a bit around my age group to hear about how it develops in my age range. However would like to hear from anyone really and hope to join in the discussions if you will have me.

 

[AKmom]

Loosing sensory (feeling) in your feet and now finger tips, does not sound like from pls. If you started 16 months ago and your in a pwc, your moving pretty fast for pls, but I guess there could be possibility. Hope they can find an answer for you. Did they do a nerve conduction study too when they did the EMG? It's normally ran with the emg and if you are loosing feeling, that should have shown up. My symptoms started when I was in my 30's, I have been declining for about 20+ years. The pls d x wasn't even brought up till 2009.

 

[Fedupbeingill]

Loosing sensory (feeling) in your feet and now finger tips, does not sound like from pls. If you started 16 months ago and your in a pwc, your moving pretty fast for pls, but I guess there could be possibility. Hope they can find an answer for you. Did they do a nerve conduction study too when they did the EMG? It's normally ran with the emg and if you are loosing feeling, that should have shown up. My symptoms started when I was in my 30's, I have been declining for about 20+ years. The pls d x wasn't even brought up till 2009.

Yes they did a nerve conduction as well and that came up clear. My neurologist has ruled out everything else and is pretty sure it is PLS. Its been quite strange I seemed to have gone down hill quickly in 12 months and now everything has ground to a halt symptom wise. My balance and walking is no worse and no better than it was 12 months ago. The lack of sensation in my feet is also no better or worse. The lack of sensation in my fingertips and getting tired using my hands and arms has declined slightly in 12 months but not really that much.
My neurologist and doctor both say that there is obviously something seriously wrong with me but all the tests come up clear.

 

[olly]

Hi,and welcome to the forum.
I was 31yrs when i began with symptoms,now 45yrs old.
Like you a doctor thought it was my knees or a bone problem and i was sent to a rheumotologist,months/tests later when i went back it was clear to the rehumi doc that it was neurological.
In the first few years i went downhill fast but since its been a slow progression.
My mri's and tests were clear but i did have neurological findings on examination and i recall my ck levels were raised/ high.

Its hard i know to be cut down in your prime,i was a very very active fulltime working single mum.
I used to be a long distance runner and went to the gym 2-3 times a week.
Like you i was on the sick alot and my employers tried to get me to resign but i always had hope that i would get better.
In the end i was made redundant .

I too can get numbness in hands/feet due to bad circulation and my feet are always freezing cold..........should add i am 5ft 11.
Maybe the numbness is due to poor circulation if your not able to move as well,being tall can also contribute.

I have done alot of research on pls over the years and have a wide range of articles collected.
Must add that the reason why your neuro wont give a definate diagnosed is that its too soon,something else could develop.
Normally you are watched for 3-5yrs some of us it was longer before diagnosed.

Take good care.

 

[vickim]

I agree with Olly, that it could take a looooonnng time to get a diagnosis. It took me 5 years and the deciding test was a muscle biopspy. Have you had a muscle biopspy? Might want to look into it. Good luck. I wish you peace.

 

[Fedupbeingill]

Hi,and welcome to the forum.
I was 31yrs when i began with symptoms,now 45yrs old.
Like you a doctor thought it was my knees or a bone problem and i was sent to a rheumotologist,months/tests later when i went back it was clear to the rehumi doc that it was neurological.
In the first few years i went downhill fast but since its been a slow progression.
My mri's and tests were clear but i did have neurological findings on examination and i recall my ck levels were raised/ high.

Its hard i know to be cut down in your prime,i was a very very active fulltime working single mum.
I used to be a long distance runner and went to the gym 2-3 times a week.
Like you i was on the sick alot and my employers tried to get me to resign but i always had hope that i would get better.
In the end i was made redundant .

I too can get numbness in hands/feet due to bad circulation and my feet are always freezing cold..........should add i am 5ft 11.
Maybe the numbness is due to poor circulation if your not able to move as well,being tall can also contribute.

I have done alot of research on pls over the years and have a wide range of articles collected.
Must add that the reason why your neuro wont give a definate diagnosed is that its too soon,something else could develop.
Normally you are watched for 3-5yrs some of us it was longer before diagnosed.

Take good care.

Thank you. You are the first person who seems to have developed it before 40 apart from me. I am very tall. I think the numbness is lack of circulation and I am 6ft 1 so like you said that it could be. I find it hard to get around as my balance is so bad and I tumble over a lot. I am hoping to start physio next year with a neurological specialist so hope that there will be a little bit of improvement enough to allow me to get around a bit more.
My feet are always stone cold. My wife makes me wear socks in bed it is so bad. I use to always walk around in just socks even in the winter but now wear fluffy slippers which seems to cut down on the problem a lot. Where do you get your info on? I have found a few bits about PLS but it seems very scarce

 

[AKmom]

Interesting Caroline, I do know that I have occasional loss off sensations in both my legs and arms, but it doesn't stay with me always. I just have to move the limb around, or have my hubby massage and it comes back. Does you loss of sensation never come back?

 

[olly]

I have to wear socks in summer.........not outside lol,but as i am home 99% of the time, round the house.
So need them for bed as thats when i am more prone to foot spasms and cold feet in bed =foot spasms.

I spent hrs and hrs searching for info,signed upto a few neuro websites,i will look through some stuff and pm or post you some.
You can also look back at past threads over the past years,mine go back 6yrs and i posted alot of info sites.

But if me and joyce (akmom) are anything to go by you can have hope......were are slow progressors,still walk a bit of sorts and only past 2yrs started using pwc or mobility scooter.

 

[olly]

Yes joyce, its purely bad circulation..........feet,hands,arms,legs.......all go dead if they dont get moved for a bit.
cross my legs for 5minutes and i can not move them if i get up.........dead as a dodo
yes sorry comes back.

 

[AKmom]

Thank you. You are the first person who seems to have developed it before 40 apart from me. I am very tall. I think the numbness is lack of circulation and I am 6ft 1 so like you said that it could be. I find it hard to get around as my balance is so bad and I tumble over a lot. I am hoping to start physio next year with a neurological specialist so hope that there will be a little bit of improvement enough to allow me to get around a bit more.
My feet are always stone cold. My wife makes me wear socks in bed it is so bad. I use to always walk around in just socks even in the winter but now wear fluffy slippers which seems to cut down on the problem a lot. Where do you get your info on? I have found a few bits about PLS but it seems very scarce

Like I said in my first post, I too started the symptoms in my 30's, but it took years for the right d x. I didn't progress quickly as some do. Regardless, Caroline is right about the circulation thing but I thought that that would come and go type of thing. Do you do any PT?

 

[AKmom]

Yes cold feet! Very bad! I always keep mine warm and love to have my lil daughter pop my socks in the dryer and bring them to me nice and toasty!

 

[olly]

Doh! i see now joyce..........fedup,you are saying numbness never ever goes away?
Did you have mri with contrast?
Has ms been fully ruled out?
You can have ms with clear mri's especially in the early stages when the brain is able to repair the areas effected quickly.
I had mri every 6months for the first 2yrs as ms was suspected then.

 

[Fedupbeingill]

Sorry I have been battling with my employer over what is going to happen to me job wise.
Yes the numbness is always there. It started off hardly noticeable and slowly got worse where it is always there. In my fingertips it is when I have been using my hands or arms a lot or maybe that is the only time I notice it.
I had a MRI on my wasit, lower back, upper back, neck and brain. Not with contrast. My neurologist said it is not MS or a trapped nerve. I am not seeing him till April but unsure if will have some more MRI's before or after then. I feel a bit like I have been left in the dark really.
I am not having physiotherapy at the moment as the local health trust sent me to one who only deals with back injuries. She has re-referred me to one who is a specialist in neurological issues so I am hoping the numbness will improve once I am exercising a bit more. I try and do some now but it gets so painful in my leg muscles.

I feel much better being able to talk to people who have experience of it. It all seems so bleak. I am hoping that for a while it stays how it is as although life is difficult at the moment I am adapting to it and slowly improving things for myself
Thank you for all your replies

 

[olly]

If your nvc was ok then the numbness can not be sensory which it would be with ms.
Does the areas just feel numb like there not there?(hard to describe)
Or are the areas really numb,if you touch them or something you can not feel anything ? which would indicate sensory.
Has this come on since you had your nvc? if so then tell your neuro as you may need it doing again.
I had total left sided numbness a few times during the first few years,like i had a stroke but it was like it felt numb however if i could still feel. Found out that it was actually weakness which made it feel that way which made sense.

 

[Fedupbeingill]

If your nvc was ok then the numbness can not be sensory which it would be with ms.
Does the areas just feel numb like there not there?(hard to describe)
Or are the areas really numb,if you touch them or something you can not feel anything ? which would indicate sensory.
Has this come on since you had your nvc? if so then tell your neuro as you may need it doing again.
I had total left sided numbness a few times during the first few years,like i had a stroke but it was like it felt numb however if i could still feel. Found out that it was actually weakness which made it feel that way which made sense.

I can feel but there is a huge loss of sensation. It also seems a bit delayed sometimes. Like I will stand on something with bare feet and there is a second delay and then I feel it. However then I often trip because my foot will catch on something but I won't feel it catch. It is hard to describe but they feel more like they are asleep than completely numb. I have had it all the time. It started just on the base of my feet and felt like I had dead skin on it. As the weakness in my legs has got worse it has spread and can now feel it on my whole feet and park of my ankle.